Tuesday, 30 December 2014

ClinicSpeak: suicidal ideation and suicide in MS

This is a reposting from the 23 March 2014.

How should I address the problem of suicide in MS? #ClinicSpeak #MSBlog #MSResearch

"We know that MSers are at increased risk of suicide; various studies put this risk at between 2 and 7 times the background risk. The study below studies suicidal ideation in MSers and found that at baseline 8% of MSers had suicidal ideation with an increase to 22% within 6 months.Wow 1 in 5 MSers think about suicide within a 6 month period. This much higher than I would have expected. Could the study have primed study subjects to consider suicide as an option? Interestingly being of 65 years of age and been disabled requiring help, predicted suicidal ideation. Not surprising depressive symptoms was also associated with suicidal ideation. I note in this study that gender did not emerge as a risk factor. In previous studies being male was a risk factor."

"How should we use this information in clinical practice? Should we be telling MSers about the increased suicide rate in MSers compared to the general population and people with other chronic diseases? Should we be screening for it on a regular basis using structured questionnaires? It is noteworthy that the ethics committee of the PROXIMUS study have asked us to do regular suicide screening in our study population. I am not convinced this is necessary; MSers who are not depressed may not like being asked about suicide each time they see is in the trial unit. What about assisted suicide in very disabled MSers as part of terminal care? Should we be supporting MSers accessing services that assist with suicide? Assisted suicide is illegal in the UK so many travel to Switzerland for this purpose. I have only one MSer in my care who has registered with Dignitas for this purpose. I had to provide a neutral medical report on their behalf for the clinicians at Dignitas; the report that Dignitas requires is a factual report documenting the diagnosis, level of disability and whether of not the person concerned is mentally competent to make decisions concerning their care. There is no requirement to make a judgement call on whether or not you support assisted suicide or not. When I wrote the report I addressed the report to the patient themselves; I did not feel comfortable writing a report directly to Dignitas. I did not want to be complicit with their decision. I suppose you could argue that because I knew what the report was being used for simply writing it makes me complicit. May be I am a coward? I sincerely hope they never takes up the option of travelling to Switzerland. I suspect they won't they have a very supportive family and is much loved by their partner and children. It has changed the way I manage this patient; I spend much more time with them when they come to clinic and we tend to go walk the extra mile to address quality of health issues; for example respite care for their partner and making sure counselling is ongoing and that their depression is managed as best we can."

"Suicide is difficult topic and may be we should have more open discussions about it as in issue for people with MS. I would appreciate your thoughts on this issue?"

OBJECTIVE: To estimate the prevalence, incidence and determinants of suicidal ideation in the MS population.METHODS: A sample of 188 subjects were randomly selected from a community-based MS clinic registry and participated in as many as 13 interviews over 6 months. Thoughts of "being better off dead" or of "harming oneself" were assessed using item 9 on the Patient Health Questionnaire, Brief (PHQ-9).RESULTS: At baseline, the 2-week period prevalence of suicidal ideation was 8.3%. Over the course of 6 months, 22.1% of respondents reported having such thoughts at least once. Survival analysis incorporating baseline PHQ-8 scores as a covariate confirmed that being age 65 and over (HR=4.3, 95% CI 1.7-11.3) and having lower quartile self-efficacy ratings (HR=3.5, 95% CI 1.5-8.2) predicted suicidal ideation. Lower levels of task-oriented coping (treated as a continuous variable) also predicted suicidal ideation after adjustment for depressive symptoms (p=0.015), as did self-reported bladder or bowel symptoms (HR=2.6, 95% CI 1.1-6.0) and difficulties with speaking and swallowing (HR=2.9, 95% CI 1.3-6.8). Associations with MS symptoms were not confounded by depressive symptoms.CONCLUSION: This study identified several potentially modifiable factors that may be useful for preventing suicide in people with MS.Disclosure: Please note the specific details of the brief case scenario above have been change to make sure the individual patient is unidentifiable.

28 comments:

I was thinking about this last night! At the diagnosis you realise you are never going to be well again and the EDSS provides a nice little roadmap of where this disease is going to take you. The losses are pretty dreadful e.g sport, long walks etc. Letting your family down is pretty bad. Then there's the constant reminder on sites like this of the time to losing your job, separating from your partner.. The data are present in such a cold way but at an individual level are totally demoralising. As Stalin said - one death is a tragedy, a million deaths a statistic. At the end of the day death is the ultimate cure for MS. The modifiable factors that could prevent my suicide are hope and more hope. I want to believe that in the not too distant future my disease can be stabilised and perhaps a few year later some modicum of repair can be delivered. My suicide will come when I hit EDSS 7 (I've got 3 points to go). It may come earlier if other things which are precious to me disappear before that. I don't see my neuro as having any say over this issue. At the end of the day, I never asked for this disease and the specialty it fell to offered nothing in terms of getting back my health. So I knew from the start that ending this disease would have to come down to me.

Completely understand and agree with you. I'm totally fed up being 'positive', it makes no difference at the end of the day but I'd like to die with dignity, not reliant on others with ms - dementia. Frankly given this blog pushes the dementia brain shredding information at every opportunity, it seems rather hypocritical to suggest that people cannot make a rational decision about ending their life. I have bought the EXIT handbook and will use this information at some point in the future (not just yet) before I've lost the ability to think for myself.

What this blog has done for me is clarify the likelihood of their being any breakthroughs in the next ten years. I'm come away every day with a sense that nothing much is likely to change e.g a drug which stops MS or a drug for regaining lost deficits. Even if a drug were identified, the hurdles have been put in its way to make sure its as slow a process as can be. When i end my life I wanted to avoid the scenario where 12 months later a wonder drug arrives to market and my family say silly idiot, if only he'd waited. I think neuros need to consider their role. Is it really about keeping people alive regardless of their suffering (and the suffering of their families)? Nappies, electric wheelchairs, peg feeding.... End stage MS is your worse nightmare (the end of a 20-30 year process). At least vets have the option to put to sleep animals which are suffering. Suicide is an escape route for some. It certainly shouldn't be condemned.

A sad topic, but almost inevitable when dealing with a neurodegenerative disease. Suicide rates among MSers would drop dramatically if there were treatments to stop progression. Faced with the knowledge that you will get worse and worse, if the bit that's too much cope with. I can't quite see why you and others don't get it. Could you cope? Really? As noted above, some hope for the future (near future) is what's needed. Once hope fades away, you have the options of watching yourself deteriorate further, or calling it a day. Nice example of being caught between a rock and a hard place.

I'm in an OK place now, although I know I'll be on antidepressants for life. You may be interested to know that I only stopped having suicidal thoughts after one of your clinics ten years ago, shortly after being dxd. I can't find the words to describe how desperate I felt and the memory is bringing tears to my eyes as I write. Your words have stayed with me. You said: 'I'm not telling you you have a terminal illness. You have a chronic condition and it's up to you to manage it'. The notion that things were, at least to a degree, in my hands was the game-changer. The package of support that followed, the very clear instructions, the 'tough love' approach worked. I was lucky in that I found a local physio and GP with exactly this outlook, enabling me to take back control. At every blip, the hospital support has been there. No idea what the future holds, but can I say now- when I didn't at the time.... thank you.

I too am, thankfully "in an OK place now". Unfortunately I know too many people, friends and family, knowing that I have MS, are NOT 'in an OK place' regardless of what I tell them. In their opinion I am in denial..... In fact one person recently said to my husband, 'isn't she meant to be in a wheelchair by now?'.... Using those wise words spoken to you 10 years ago may in future hold more weight, so THANK YOU for your comment. May we both continue to be in that OK place for a long time yet.

Stabilise disabilty or reverse disability and suicide rates among MSers would drop. Perhaps that metric should be the outcome measure for trials. Stuffing people on antidepressants isn't the answer. As anon says above, it's all about hope - the hope that progression can be stopped. You can't plan or look forward to a future where you continue to deteriorate. Fingers crossed for Charcot project, B cell depleting therapies, and remylination trials.

Suicide in MS simply reflects the lack of progress in MS research. It's easy to say that the number of treatments available shows the progress being made, but they've had little impact on those who attend my local MS club. Until treatments are available for all types of MS and until these make a real difference i.e more than just slowing down the disease, suicide will continue to offer a way out of this very difficult situation. It's a devastating disease which destroys dreams and hopes, in essence what life is about.

Thanks for this post. It begs a question for me - how disabled do you want to get? I want to live with dignity and with independence. Once the disease gets near to taking these away it's time to go. I don't need antidepressants to mask the problem nor counselling to convince me things aren't so bad (i'm not an idiot). You have said that MS is a bad disease. If you actually live with it, I think it's worse than even you can imagine. While i'm not planning on suicide, it gives me a sense of overall control ie my disease knows that if it pushes me too far, it will be the end for both of us.

The pain I felt for nearly 6 months during my first relapse and diagnosis was enough to make me suicidal. There is no way I could have lived with that pain had not most of it subsided. I still have pain and I know I will have many challenges in the future, but it is the constant nerve pain that may bring many to suicidal thoughts and not just the idea of not walking again.

It's looking more and more likely that I have PPMS at the ripe old age of 25. Looking at the research in the area I know my prospects are looking extremely bleak, is it any wonder that we have suicidal thoughts?Every dream I ever had seems to be crumbling, any hope of going back to university and furthering my studies has vanished. I feel helpless, completely void just like a shell of a person. I don't think clearly at all anymore. I can't agree more with the other posters. What hope do we have?

Your tube map is simply terror inducing, as is the idea that this disease is not terminal. If you have PPMS i'd wager that it almost certainly is. Do neurologists care?

barely! You said yourself upon the formation of the international collaboration on progressive MS.. Why wasn't this area addressed earlier?

I desperately fear becoming a burden soon on my family and friends and at the moment cannot even begin to comprehend it. Yes fingolimod may be coming toward the end of the year and Ocrelizumab later (although I am not holding my breath for it)

Why can't we as PPMS'ers have access to anything that may potentially work, at least it will provide hope a commodity that PPMSers so greatly crave.

I have a niece who was born 14 weeks early more than two decades ago. She has very severe cerebral palsy and is physically extremely disabled as well as being profoundly deaf. So as far as EDSS goes she is way up there, but that doesn't prevent her from having goals in life, passions and a joie de vivre. Maybe that's informed my view of my increasing disability and enjoying life to the full.

Long before I was diagnosed I felt suicidal for a different reason, after diagnosis it's about doing what I can (with whatever adjustments are needed).

Sure, I'd love someone to wave a magic wand and eliminate the damage in my brain and spinal cord - but that's not going to happen and anyway, we are all going to die in the end. I would not appreciate my neurologist asking me if I was suicidal every time we met - but I would hope if I was severely depressed that he could help me access help.

"How should we use this information in clinical practice? Should we be telling MSers about the increased suicide rate in MSers compared to the general population and people with other chronic diseases?"

I'd say be attentive to signals and don't hesitate to refer to psychologist/psychiatrist; there are some good meds that can keep the black wolf on a leach.

As the writer of a widely read MS blog, I can state with some certainty, based on my correspondence with many, many patients, that suicide ideation amongst those with even moderately progressed progressive MS is the rule, rather than the exception. In my personal communications with other progressive MSers,. the topic of "escape plans" comes up with surprising regularity, and with a stark frankness. Honestly, I'd estimate that at least 90% of the poor souls afflicted with the progressive flavor of this disease harbor thoughts of suicide.

And why not? The dark at the end of the tunnel for people with progressive MS is an interminable life lived as a cogent, fully aware brain trapped in a prison of completely useless flesh and bone. The stuff of nightmares, for sure. For many, the question of suicide isn't "should I" but "when should I". The great fear is that the disease will progress to a degree that takes the decision out of our hands, quite literally.

As others here have noted, hope, of course, is what keeps us going. The possibilities of stem cells, the HERVs research, and other glimmers help keep that hope alive. But the clock is ticking, and quite loudly for some of us.

We try to live in the moment, practice mindfulness, and continue to live life as best we can, but that ominous future is a constant, frightening, and grating companion. The courage displayed by my fellow patients never ceases to astound me.

Don't you think that depression could be an MS symptom rather than a consequences of its symptoms? it would explain why MSers are so frank about it. Everybody degenerates (it can even be worse than MS) and dies (sorry to warn you) but not everybody has suicidal thoughts.

There is nothing to add to the posts above which encapsulate perfectly my own views. I have never felt down or depressed in my life but it is logical to plan your exit when you know whats coming. My Mother had MS, my brother has MS so I know the future.

I'm not sure there is anything you should do about suicide in ms, other than continue what you do already. Whether and under what conditions life is worth living is not your question to ask as a doctor. It is one your patients ask, every time the disease steals something that was key to identity and well being. We face a life sentence on ever worse terms. Of course we ask the question, when does or should it end. Continuing to treat your patients with care and skill is the best thing you can do re suicide. This question is fundamentally ours, not yours.

As already said I imagine suicidal thoughts are very prevalent in MSers

Suicide crossed my mind when I was diagnosed. Not in an acute manner but rather planning for the end if things got really bad. A way out of what I would consider to be intolerable suffering. As someone has said life is the stuff of hopes and dreams and this disease crushes them at a time many people are just beginning to shine.

When I was diagnosed I felt like someone had stamped all over my hopes and dreams with such aggression that they were lost forever. I could not have been more scared then if a gun had been placed to my head. 18 months later and 6 months of private therapy I still feel that gun against my forehead but it no longer fills me with such terror. I guess you could call it a learnt helplessness or should that be depression.

At the moment I am well and I have a strong desire to live but if the time comes it comforts me to know suicide is an option.

MSers would benefit from better access to psychological support. I don’t think anything can prepare you for the catastrophic effect on one’s emotions when MS rears its ugly head.

What I got from this "Evidence-based guideline: Assessment and management of psychiatric disorders in individuals with MS", is that there are no contra indications for treating depression with medications.lucky us ;) we're not worse of then other people in that regardhttp://www.neurology.org/content/early/2013/12/27/WNL.0000000000000013.short

There are things even doctors can't handle. I know better than to talk to even my very good MS specialized psychologist about suicide. I don't plan on doing it any time soon, hopefully never, but it's just irresponsible not to include it in the list of possibilities. Doctors tend to over conflate suicide with depression, but it's not depression, it's just being practical. I always say no to the regular surveys about depression knowing that they are there as potential suicide detectors and always thinking to myself that they are missing the point. I'm not depressed, but life is way more difficult for me than it is for non-MSers. I'm fighting the good fight, I fight 100 times harder life than non-MSers, but society does not reward you for that. If someone were to guarantee me that I would be given comfort and safety no matter what happened then suicide would be almost completely off the table. I'm a solo player in life, I have friends and family, but not in the capacity that's always shown on the cover of MS charity flyers that make it appear that all people with MS have a strong family that's dedicated to their care. But the same people who are actively encouraging me to seek help if I feel "depressed" have a very hard time even telling me what happens when my checking account hits zero. And they get very uncomfortable when I ask questions about the happiness in life after that.

So doctors imagine those scenarios. You're alone and you have MS and you're checking account just hit zero. You used to have a good life. Now are you starting to understand?

Hear hear, I feel exactly the same. A rational decision to end your life is completely different from having 'suicidal ideation" of the type defined by clinicians. I very much doubt that the medical profession will understand so it is better just to research and plan so when the time comes you can do this with as little pain as possible (and there are two methods that appear to work in this regard according to EXIT), keeping doctors well out of the picture. Why the heck would anyone want to to exist (notice I don't say live) in pain, poverty and suffering. And despite all the 'sympathetic' friends and doctors talking about life will get better etc etc, with MS it really doesn't.

Interesting if ProfG doesn't do it I will have a look, but everyone can read and it is important to realise that this group of people had failed a number of other treatments and so are at the more aggressive spectrum

This is something that I ponder - if those with less aggressive forms of the disease get these treatments, will they have a better change of getting closer to a 'cure' than those with more aggressive disease? The query being do those with apparently less aggressive early disease have an inflammatory component that is less and will that be as amenable or less amenable to aggressive anti inflammatory treatment?

I also had a similar experience to that in a post further up. In my first relapse, the pain was so bad that I thought about suicide. I was not depressed. My body was on fire and I could not have lived with that pain permanently. Thankfully, with the help of Lyrica, the pain is now low to bearable and the thought of suicide has gone.

I will never "commit suicide", but I will choose to end my life when I no longer want to live with MS. We all have limits and whilst I will not be preemptive in executing my decision, I think I know where I'll draw the line.

I have been brought up to be a practical person, so my thoughts about such things as extraordinary measures and life support were well developed long before my diagnosis. My thoughts and feelings are not an emotional reaction to my diagnosis, but a cool, calm and rational decision based on my long-held thoughts about what I am willing to put myself and my loved-ones through. My family are very aware of my intentions (for what I hope will be the very distant future) as, thankfully, is my husband. They all understand that I have a plan and they support me.

I am on antidepressants and in therapy to try to deal with my feelings about MS, but despite this (and despite being only very mildly disabled [RRMS diagnosed almost 3 years ago]), the simple fact is that this disease has got me and the chances are that it will only get worse. I'm on an effective DMT and I've taken part in a clinical trial, so I'm "doing my bit" for research, but despite all the *helpful* tips from my therapist about mindfulness, positive thinking and coping strategies, the inescapable facts are that:- as yet, no one knows what causes this ba$tard disease- there currently is no cure- there is nothing I can do to get rid of it

These facts leave me claustrophobic in my own body. In my personal and professional lives I am a problem solver: I fix things or remove them from the equation and move on. MS is Superglued to me: it is the ball and chain on my ankle and the millstone around my neck. It is inescapable.

It was suggested by my neurologist that reading this blog was probably contributing to my depression! I could have thumped him! This blog gives me hope and I'd hate to think how I'd feel if I didn't know that Prof G and his team were working hard to help us.

I lost a lot of people who died way too soon. I know what sadness means, I have been sad even very sad before MS. But a year before my diagnosis I had suicidal thoughts and these thoughts seemed to me very suspicious. I love being alive and really not ready to starve myself. Vit D is helping a lot for my mood.

So here is my question for the neuros. When will you consider depression and suicidal ideas as a symptom (and not a consequences of symptoms)?

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